Brittle bones, unbreakable spirit
Sam Renke has been challenging misconceptions about disability since she was diagnosed with a rare genetic condition called Osteogenesis Imperfecta (OI), or brittle bone condition, shortly after her birth.
“I was born with multiple fractures and I actually fractured in utero,” explains the award-winning actress, broadcaster, writer, disability rights campaigner and diversity and inclusion consultant. After Sam was taken to another hospital for further tests, her parents received the diagnosis.
OI is caused by a genetic mutation that affects the production of collagen, causing bones to break easily, as well as bone deformities and other symptoms depending on the severity of the condition. The UK’s Brittle Bone Society estimates that approximately 1 in 15,000 people are born with OI. Diagnosis is made with the aid of X-rays and genetic tests, among other medical technologies.
“From the word go, it was very much a negative narrative, like ‘Sorry, there’s something wrong with your child.’ I think it was quite traumatic for my parents in the sense of being young themselves, having an older child with no disability, and then this kind of bombshell,” the former teacher tells This Is MedTech. At first Sam went to a school for disabled children, but it soon became apparent that she would be better served by a mainstream education.
Nevertheless, she faced barriers that many disabled people experience. “I’ve always been labelled as someone that wouldn’t achieve or couldn’t achieve. I think a lot of my success comes from the drive to prove people wrong,” she notes. But it wasn’t until years later when she became a trustee for the Brittle Bone Society that Sam really started having pride in her disability.
“I don’t see my wheelchair or my disability as a negative. I see it as a positive. I’m not wheelchair bound. I’m a wheelchair user,” Sam points out. She wants to change societal attitudes towards disability and works with numerous charities to raise awareness and challenge inequalities.
Having been in and out of hospital throughout her life, Sam acknowledges the important role medtech plays in supporting disabled people. “I had telescopic rods implanted in my legs at two and four years old. Later I had spinal fusion. These, as well as hydrotherapy and physiotherapy, were integral to my health and prolonging my life,” she says.
As for everyday support, Sam believes the conversation around technology for disabled people is especially important. To this end, she welcomes the greater focus on aesthetics and design that she’s seeing these days. “As a young disabled woman, I want to feel sexy and confident. I want my wheelchairs and any kind of mobility aid to reflect my character and not say ‘medical device’.”
Sam also sees the potential for technology to foster more independence. “The pandemic has shown that we can all work and we can all be more inclusive. We’ve proven that with the way we can use virtual meetings and so forth. I think we need to be working with disabled people and using technology to that advantage and maybe not looking at things in such a linear way.”
International Day of People with Disabilities takes place on December 3rd, with the 2021 theme being “Fighting for rights in the post-COVID era”.